New to this forum it helps to know others can understand how I’m feeling .........

[Shell190]

Hi guys new to this forum! So nice to be able to read everyone’s experiences. Was diagnosed 5 years ago with RA have been on hydroxy since then, initially symptoms manageable but since Xmas seems every joint is in pain - put on methotrexate but had to stop due to sickness/headaches. Given depo steroid in butt end May to tide me over and got my life back (became delusional thinking I was in remission) 😩 just came out of hospital had septic arthritis in elbow. I love steroids and yes I know their a quick fix! but Dr refuses to prescribe - due to start sulfazeine after my holiday which will be in two weeks. I know everyone reacts differently but would like to know what others have experienced using this drug. I feel so alone none of my family/friends seem to understand what I am going through....... xx

[Hidden]

Depo injection can feel a bit cruel if it makes you forget RA, but then you have to remember again! Sorry about your elbow. OH has Salfa. Initial early morning headaches that soon passed and yellow pee!

[nomoreheels]

Hiya Shell190, welcome. Be assured we do know how it feels to have RD, though it is helpful if family & friends have some idea so maybe have a look through the NRAS site together, or give the link so they can make their own minds up if they want to understand more about how it is for you, bad & good of course nras.org.uk

Sulfasalazine was the third DMARD I tried after hydroxychloroquine & methotrexate (which I remain on, 9 years now). Unfortunately just as MTX wasn't for you neither was SSZ for me, it didn't go any way towards controlling me so I had to stop it. It also made me so low & gave me terrible nausea even though I was prescribed an antiemetic so it wasn't difficult to stop it. I then tried leflunomide which also had to be stopped due to Carpal Tunnel Syndrome symptoms & peripheral neuropathy. So, my MTX dose was increased which to date has helped.

Asking how people respond to particular meds always comes with the predictability that you'll receive a multitude of varying answers! All you can do is try, you see I have nausea, headaches & feel bleurrgh for a couple of days after I inject at the mo because I have recently had a dose increase. I know my body's getting used to the increase & it will settle & I'll become better controlled. But, it's how's disruptive it is to your life, only we, the one taking the med, can determine that.

Steroid injections are good but they're only a short term solution. If only they didn't come without issues, I guess most of who aren't would be better controlled if we could have them long term! I've been on low dose oral steroids for 5 years, not good either but at least I know my bone density is ok for now. Discussing tapering off them at my next review, can't wait.

I hope your elbow is fine now & have a good holiday, you'll be nice & refreshed to start SSZ on your return!

[Hidden in reply to nomoreheels]

Sorry you re having rough time of it nmh, hope it improves soon x

I know nothing about sulfa bar a friend couldn’t tolerate it, sorry she’ll, hope you good result x

[nomoreheels in reply to Hidden]

I'm fine thanks Keren. Just need to get to the bottom of this amaemia, tests are fine so far, just need to.....stop falling asleep!

[Hidden in reply to nomoreheels]

Hope they get to bottom of it soon: I sleep more when disease not controlled could it be that? or maybe increase in MTX; that wipes you out too as well as anaemia: hark at me - dr Keren lol. Take good care of yourself x

[nomoreheels in reply to Hidden]

Thanks Keren. Waiting on biopsy results, may get a better picture from those, or not! You could well be right about the fatigue of not being the best controlled I've been, the dose increase could have a part to play too... who knows. As I've had clear results so far the best candidates from reading up on them are my meds & the disease itself. We'll see what the next bloods reveal.

You ok? x

[Hidden in reply to nomoreheels]

Yes thanks, waiting on biologics and not on anything so hands a bit rubbish: all a bit daunting really but that’s RD all over. I’m told they have less side effects 🤞x

[nomoreheels in reply to Hidden]

Oh good luck, I hope you've not too long a wait. x

[Elswick]

Hi I am the opposite to you went on sulfazeine was really ill loss of appetite sick zombie. Put on mtx injections getting their been on them 4 weeks now feel bit nausea but no pain that’s the main thing hope to return to work soon fingers crossed 🤞 see how it go s all the best to you we’re all different tc x

[Rubyroo1]

Hi and welcome,

I have just been prescribed Sulpha 1 x 500mg per day and Prednisolone 10mg per day along with Adcal D3 2 x day. I have only been taking these for just under a week, and due to up the dose of the Sulpa tomorrow to 2 x 500mg per day, then 3 per day in week 3 and then 4 per day in week 4, and so far, so good. I think that the prednisolone has started to kick in, but I still have aches in my knees and wrists, not sure if worse today because it is damp outside ?! No bad side effects ,as such, so far........ did have a headache at first but wasn't sure if this was the pills or just fatigue! Cant say I have noticed pee being very different but maybe this will change upping my dose ?! I initially had a steroid injection in my bum which lasted less than a week, so glad now to be on meds, just have to see how it goes from here....

From reading posts here it seems like it is a trial and error journey until you find what works for you.......Good luck

[HappykindaGal]

I take mtx and SSZ. For first month of SSZ I was nauseous, dizzy and generally rubbish. Spoke to the pharmacist at the surgery who suggested I persevered as the side effects should go at around 12 weeks and he was right. At same time, cam off the Pred, but now in a bit of trouble again with pain and exhaustion. It's about balancing risk and reward I think too. I don't want to feel like this every day so will talk to rheumy about continuing with 2mg Pred daily as that works for me.

[stbernhard]

I was on Sulfasalazine for several years and had no side effects what so ever. IT is possible! I hope it will be the same for you. Keep in touch.